TSH all over the place?

[jqk_]

Hey all,

29 year old male here. Been having lots of symptoms which at times seem like hyperthyroid and other times seem like hypo. One unusual thing is that I felt horrible last winter, and then got much better during the summer (although still very crappy), and now it's winter again and I feel horrible again. Normally, when I tell that to a doctor they basically dismiss everything and tell me it's depression, but I actually love the winter, it's my favorite season, and the only thing I'm depressed about these days is at the fact that doctors seem to be clueless.

Anyway, no doctor seems to test all thyroid stuff, usually just TSH, and sometimes T4, and besides that maybe I was tested for other stuff once.

So I was reading an article about how a TSH > 2 should be considered hypothyroid, and that a TSH < 1 could be something, and < 0.5 is likely hyperthyroid. Please correct me if that's wrong, but that's just something I read. With that being said, I've had a TSH result that was 2.1, and other times 0.48 and a few 0.5's. Most of the time I'm within 1.0 - 1.8 though.

Here's my most recent results, which I thought the Total T3 was interesting:
TSH: 1.15 (0.34 - 5.60)
Total T4: 8.7 (4.6 - 10.6)
Total T3: 88 (87 - 178)

Is there any sort of thyroid issue that can make your TSH go kinda back and forth like that? Also isn't a low t3 associated with hypothyroid, whereas my TSH if anything is more hyperthyroid?

I'm so confused, any insight is greatly appreciated :)

[gimel]

I had just written a long answer and when I tried to post it, I was required to log in again and when I went back my post had disappeared.  So starting again.

I am so used to the usual test being Free T4, I did overlook that it was Total T4. So, if your Total T4 is indicative of your Free T4, then it would be adequate.  The problem is that if your Total T3 is indicative of your Free T3, then that would be much too low, and the likely cause for your symptoms.  Also, that would indicate inadequate conversion of T4 to T3.  Ferritin is one of the important factors for conversion, so it needs to be tested.  Don't be concerned with your TSH.  Except at extreme levels, TSH is a poor diagnostic  for thyroid status.  The main value for TSH is to distinguish between primary and central hypothyroidism.  

As mentioned the most important indicator of thyroid status is symptoms.  You have a number of hypo symptoms.  You also mentioned a couple that you thought were hyper; however, I can find all your symptoms in a  existing very long list of symptoms that can be related to hypothyroidism.  Hyperthyroidism typically occurs along with high levels of FT4 and FT3 which you don't seem to have.  So I would focus on getting tested for all those recommended previously.  If the doctor resists, just give him a cop of the following link that confirms all that I have said.  I also recommend that you read at least the first two pages, and more, if you want to get into the discussion and scientific evidence for that all the recommendations.

http://www.thyroiduk.org/tuk/TUK_PDFs/The%20Diagnosis%20and%20Treatment%20of%20Hypothyroidism%20%20August%202017%20%20Update.pdf

The most important thing for you right now is to find a good thyroid doctor that will treat clinically, by testing and adjusting Free T4 and Free T3 levels as needed to relieve symptoms, without being influenced by resultant TSH levels.  Symptom relief should be all important, not just test results, and especially not TSH.

If you cannot locate a good thyroid doctor, I can possibly suggest one that has been recommended by other thyroid patients.

[jqk_]

Thanks again. I’ll definitely take a look at that link. And yes, if you or anyone else here knows a good doctor in NJ I’d definitely prefer that over picking one at random. I’m not really a big fan of just trying out meds based off a clinical diagnosis, I’d prefer to get like 2 full sets of testing with a week or 2 in between to make sure it’s consistent before. I’d hate to start taking something and then my levels change and now I’m taking something that may cause more harm than good.

[gimel]

First thing to note is that the Standard of Care for Hypothyroidism (SOCH) followed by most doctors (testing for TSH w/reflex to Free T4) is based on the AACE/ATA Guidelines for Hypothyroidism.  Both of those assume hypothyroidism is defined by "inadequate thyroid hormone".    This is incorrect.  The correct definition is "inadequate T3 effect in tissues throughout the body, due to inadequate supply of, or response to, thyroid hormones".  The two definitions are quite different and result in quite different approaches to diagnosis and treatment for hypothyroidism.  Your lack of success so far in getting a doctor to recognize your likely hypothyroidism is their reliance on the SOCH and the definition of hypothyroidism assumed in the AACE/ATA Guidelines.    

The SOCH does not work for most hypothyroid patients because with the exception of extreme values of TSH, there are no biochemical tests that are adequate as a pass/fail decision for a person's thyroid status.   The reason is that even though TSH is supposed to be an accurate measure of thyroid hormone adequacy, TSH has only a weak correlation with Free T4 (or Free T3), and has a negligible correlation with Tissue T3 Effects, which determine a person's thyroid status.   The reason for the negligible correlation of TSH with Tissue T3 Effects is that there are additional processes (transport of thyroid hormone into tissues and conversion of T4 to T3/Reverse T3) and variables that affect Tissue T3 Effects.  So TSH is inadequate as the primary diagnostic for hypothyroidism.  Further, an FT4 test is also inadequate a as a major diagnostic since FT4 has only a weak correlation with Tissue T3 Effects.  

Diagnosis of a patient for potential hypothyroidism should start with a full medical history, along with evaluation of signs/symptoms that occur more frequently with hypothyroidism, and extended biochemical testing.  Testing should include FT4, FT3 and RT3.  You also need tests for Cortisol, Vitamin D, B12 and ferritin due to their potential impact on Tissue T3 Effects and resultant signs/symptoms.   Those signs/symptoms are the best indicator of a person's potential hypothyroidism, followed by the relative levels of Free T4 and Free T3.  Excessive RT3 can also be a contributor.  Vitamin D and  cortisol can effect the response to thyroid hormone.  B12 is a common deficiency with hypothyroidism and can contribute to a typical symptom of fatigue.  And ferritin is a major factor in conversion of T4 to T3.  

Looking at your test results your TSH results don't point to anything.  Such variation is common with TSH testing.  Your Free T4 is above mid-range, which is adequate.  The issue I see is that your Total T3 is at rock bottom of the range.  You really should insist on testing for Free T3 in the future since it is the biologically active thyroid hormone that most affects metabolism in tissue throughout the body.  If your TT3 is reflective of your FT3, then that is the likely cause for any hypo symptoms.  The disparity between FT4 and TT3 levels is indicative of inadequate conversion of T4 to T3.  So I highly recommend getting the additional testing listed above.  Among other benefits this will determine if low ferritin is the cause for the low TT3.

Since the most important indicator for a potential diagnosis of hypothyroidism is signs/symptoms, please tell us about that.  

[jqk_]

First off, thanks a lot for such an informative response. I don't even know where to start to response :P

Good to know that at least the TSH variations are normal, still interesting to me that they are so drastically different at times where some may suspect hypothyroid and at other times people suspect hyperthyroid.

You made reference to my Free T4, which I actually only posted Total T4 (typo?) either way, looking back at some other random old tests my Free T4 was taken one and was actually the exact middle of the range 1.19 (0.59 - 1.80). My Total T4 has always been between 8.7 - 10.5.

As for Free T3 I had it tested only once and it was 3.57 (2.00 - 4.0).

Now onto symptoms, I have some of both hyper and hypo.
Fatigue, weight gain, hair loss, dry skin, anxiety, heat intolerance, super high heart rate (usually 100+ resting; 140+ if I'm standing or walking, but 50's while I'm asleep), light sensitivity, lightheaded, and tinnitus.

Not sure if it's actually anxiety, doctors have suggested POTS before. It's like I have physical symptoms that people experience with anxiety, but I'm perfectly calm at the time, but sometimes I freak out, but who wouldn't panic if their heart rate hits 210 (has happened a few times).

Had countless ekg's and like 3 or 4 echo's and every cardiologist has said my heart is perfect, just beating fast. Besides my thyroid suspicions I did have a brain MRI which says I have a 3mm chiari malformation but I've been told that is probably of no relevance.

I've done a 23andme test and also used the raw data to get my health risks, and interestingly enough my highest risk which is significantly higher than any others is for autoimmune thyroid disease. There are a bunch of other snp's I have that are related to autoimmune issues, lupus, and thyroid. Lupus has been brought up to me by a few doctors now but always dismissed because although I had a positive ANA once I have no apparent kidney or liver issues.

At this point I've literally given up on doctors since no one seems to ever do a full workup for anything they suspect, and after 1 test comes back normal or within normal ranges they throw benzo's and antidepressants at me. As much as I love xanax, ativan, and valium to take the edge off, and I do take them occasionally, they really don't help me.

I really don't even know what to do anymore. I have no wife/girlfriend/family to help with anything and I'm literally 90% disabled from all this that's been going on :/

[Red_Star]

Hashitoxicosis. I've had both types. I posted in depth on another answer.

http://www.medhelp.org/posts/Thyroid-Disorders/Hashitoxicosis/show/2719050

[gimel]

I just sent you a PM with info.  to access, just click on your name and then from your personal page click on messages.

[gimel]

What area of NJ?

[jqk_]

I’m north but willing to travel for someone that’s better. Also insurance or money isn’t an issue.

[gimel]

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